nacc uniform data set (uds) forms – initial visit packet · guidebook pages 11–14. check only...

Copyright© 2005-2006. University of Washington. Created and published by the ADC Clinical Task Force (John C. Morris, MD, Chair) and the National Alzheimer’s Coordinating Center (Walter A. Kukull, PhD, Director). All rights reserved.

4311 11th Avenue NE #300 Seattle, WA 98105 phone: (206) 543-8637; fax: (206) 616-5927 e-mail: [email protected] website: https://www.alz.washington.edu

Department of Epidemiology, School of Public Health and Community Medicine, University of Washington

NACC Uniform Data Set (UDS)

FORMS – Initial Visit Packet

(Version 1.2, March 2006) NOTE: Version 1.2 is NOT the most current version of the UDS forms and

is no longer used for data submission. For the most current version, please visit http://www.alz.washington.edu.

phone: (206) 543-8637; fax: (206) 616-5927 e-mail: [email protected] website: www.alz.washington.edu

(Version 1.2, March 2006) Page 1 of 2

NACC Uniform Data Set (UDS) – Initial Visit Packet

Form Z1: Form Checklist

Center: ______________ ADC Subject ID:__ __ __ __ __ __ __ __ __ __ Visit Date:__ __/__ __/__ __ __ __

NOTE: This form is to be completed by clinic staff. ADC Visit #:__ __ __

Examiner’s initials: __ __ __

NACC expects and intends that all UDS forms will be attempted on all subjects, but we realize this may be impossible when the patient is terminally ill, or when there is no informant, or for other reasons. NACC requires that Forms Z1, A1, A5, B4, B9, C1, D1, and E1 be submitted for a subject to be included in the UDS database, even though these forms may include some missing data.

For forms not designated as required, if it is not feasible to collect all or almost all of the data elements for a subject and the ADC therefore decides not to attempt collection of those data, an explanation must be provided. Please indicate this decision below by including the appropriate explanatory code and any additional comments.

KEY: If the specified form was not completed, please enter one of the following codes: 95 = Physical problem 97 = Other problem 96 = Cognitive/behavior problem 98 = Verbal refusal

Form Description Submitted:

Yes No

If not submitted, specify reason

(see Key) Comments (provide if needed)

A1 Subject Demographics REQUIRED n/a n/a

A2 Informant Demographics 1 0 __ __

A3 Subject Family History 1 0 __ __

A4 Subject Medications 1 0 __ __

A5 Subject Health History REQUIRED n/a n/a

B1 Evaluation Form – Physical 1 0 __ __

B2 Eval. Form – Hachinski Ischemic Scale 1 0 __ __

B3 Evaluation Form – UPDRS 1 0 __ __

B4 Global Staging – CDR REQUIRED n/a n/a

B5 Behavioral Assessment – NPI-Q 1 0 __ __

B6 Behavioral Assessment – GDS 1 0 __ __

B7 Functional Assessment – FAQ 1 0 __ __

B8 Evaluation – Physical/Neurological Exam Findings 1 0 __ __


NOTE: This form is to be completed by clinic staff. ADC Visit #:__ __ __

Examiner’s initials: __ __ __ KEY: If the specified form was not completed, please enter one of the following codes:

95 = Physical problem 97 = Other problem 96 = Cognitive/behavior problem 98 = Verbal refusal

Form Description Submitted:

Yes No

If not submitted, specify reason

(see Key) Comments (provide if needed)

UDS Form Z1: Form Checklist (Version 1.2, March 2006) Page 2 of 2

B9 Clinician Judgment of Symptoms REQUIRED n/a n/a

C1 MMSE and Neuropsychological Battery REQUIRED n/a n/a

D1 Clinician Diagnosis – Cognitive Status and Dementia REQUIRED n/a n/a

E1 Imaging/Labs REQUIRED n/a n/a




Form A1: Subject Demographics

Center: ______________ ADC Subject ID:__ __ __ __ __ __ __ __ __ __ Visit Date:__ __/__ __/__ __ __ __ NOTE: This form is to be completed by intake interviewer per ADC scheduling records, subject interview, medical records, and proxy informant report ADC Visit #:__ __ __ (as needed). For additional clarification and examples, see UDS Coding Guidebook pages 4–10. Check only one box per question. Examiner’s initials:__ __ __

Source of Referral:

1. Subject enrolled in NACC MDS: 1 Yes 0 No

2. Primary reason for coming to ADC:

1 Participate in research study

2 Clinical evaluation

3 Other (specify): ______________________

9 Unknown

3. Principal referral source: 1 Self/relative/friend 2 Clinician

3 ADC solicitation

4 Non-ADC study

5 Clinic sample

6 Population sample 7 Non-ADC media appeal

(e.g., Alzheimer’s Association)

8 Other (specify): ______________________

9 Unknown

4. Presumed disease status at enrollment:

1 Case/patient/proband

2 Control/normal

3 No presumed disease status

5. Presumed participation: 1 Initial evaluation only 2 Longitudinal follow-up planned

6. ADC enrollment type: 1 Clinical Core 2 Satellite Core

3 Other ADC Core/project 4 Center-affiliated/non-ADC

7. Subject’s month/year of birth: __ __/__ __ __ __

8. Subject’s sex: 1 Male 2 Female


UDS Form A1: Subject Demographics (Version 1.2, March 2006) Page 2 of 3

9a. Does the subject report being of Hispanic/Latino ethnicity (i.e., having origins from a mainly Spanish-speaking Latin American country), regardless of race?

1 Yes 0 No

9 Unknown

9b. If yes, what are the subject’s reported origins?

1 Mexican/Chicano/ Mexican-American/

2 Puerto Rican

3 Cuban

4 Dominican

5 Central American 6 South American

50 Other (specify): ______________________

99 Unknown

10. What does subject report as his/her race?

1 White 2 Black or African American

3 American Indian or Alaska Native

4 Native Hawaiian or Other Pacific Islander

5 Asian

50 Other (specify): ______________________

99 Unknown

11. What additional race does subject report?

1 White

2 Black or African American



5 Asian

50 Other (specify): ______________________

88 None reported

99 Unknown

12. What additional race, beyond what was indicated above in questions 10 and 11, does subject report?

1 White 2 Black or African American



5 Asian 50 Other (specify):

______________________

88 None reported

99 Unknown


UDS Form A1: Subject Demographics (Version 1.2, March 2006) Page 3 of 3

13. Subject’s primary language: 1 English 2 Spanish

3 Mandarin

4 Cantonese

5 Russian

6 Japanese 8 Other primary language

(specify):_______________

9 Unknown

14. Subject’s years of education (report achieved level using the codes below; if an attempted level is not completed, enter the number of years attended). High school/GED = 12; Bachelors degree = 16; Master’s degree = 18; Doctorate = 20 years:

__ __ (99 = Unknown)

15. What is the subject’s living situation?

1 Lives alone 2 Lives with spouse or

partner

3 Lives with relative or friend

4 Lives with group 5 Other (specify):

______________________

9 Unknown

16. What is the subject’s level of independence?

1 Able to live independently 2 Requires some assistance

with complex activities

3 Requires some assistance with basic activities

4 Completely dependent

9 Unknown

17. What is the subject’s type of residence?

1 Single family residence 2 Retirement community

3 Assisted living/ boarding home/adult family home

4 Skilled nursing facility/ nursing home

5 Other (specify): ______________________

9 Unknown

18. Subject’s primary residence zip code (first 3 digits):

__ __ __ (leave blank if unknown)

19. Subject’s current marital status:

1 Married

2 Widowed

3 Divorced

4 Separated

5 Never married

6 Living as married

8 Other (specify): ______________________

9 Unknown

20. Is the subject left- or right-handed (for example, which hand would s/he normally use to write or throw a ball)?

1 Left-handed 2 Right-handed

3 Ambidextrous 9 Unknown




Form A2: Informant Demographics


NOTE: This form is to be completed by intake interviewer per informant’s ADC Visit #:__ __ __ report. For additional clarification and examples, see UDS Coding Guidebook pages 11–14. Check only one box per question. Examiner’s initials:__ __ __

1. Informant’s month/year of birth: __ __/__ __ __ __ (99/9999 = Unknown)

2. Informant’s sex: 1 Male 2 Female

3a. Does the informant report being of Hispanic/Latino ethnicity (i.e., having origins from a mainly Spanish-speaking Latin American country), regardless of race?

1 Yes 0 No

9 Unknown

3b. If yes, what are the informant’s reported origins?

1 Mexican/Chicano/ Mexican-American/

2 Puerto Rican

3 Cuban

4 Dominican

5 Central American 6 South American

50 Other (specify): ____________________

99 Unknown

4. What does informant report as his/her race?

1 White




5 Asian

50 Other (specify): ____________________

99 Unknown

5. What additional race does informant report?

1 White




5 Asian

50 Other (specify): ____________________

88 None reported

99 Unknown


NOTE: This form is to be completed by intake interviewer per informant’s ADC Visit #:__ __ __ report. For additional clarification and examples, see UDS Coding Guidebook pages 11–14. Check only one box per question. Examiner’s initials:__.__.__

UDS Form A2: Informant Demographics (Version 1.2, March 2006) Page 2 of 2

6. What additional race, beyond what was indicated above in questions 4 and 5, does informant report?

1 White




5 Asian

50 Other (specify): ____________________

88 None reported

99 Unknown

7. Informant’s years of education (report achieved level using the codes below; if an attempted level is not completed, enter the number of years attended). High school/GED = 12; Bachelors degree = 16; Master’s degree = 18; Doctorate = 20 years: __ __ (99 = Unknown)

8. What is informant’s relationship to subject?

1 Spouse/partner

2 Child

3 Sibling

4 Other relative

5 Friend/neighbor

6 Paid caregiver/provider

7 Other (specify): ____________________

9 Does the informant live with the subject?

1 Yes (if yes, skip to #10)

0 No

9a. If no, approximate frequency of in-person visits:

1 Daily

2 At least 3x/week

3 Weekly

4 At least 3x/month

5 Monthly

6 Less than once a month

9b. Approximate frequency of telephone contact:

1 Daily

2 At least 3x/week

3 Weekly

4 At least 3x/month

5 Monthly

6 Less than once a month

10. Is there a question about the informant’s reliability?

1 Yes 0 No




Form A3: Subject Family History


NOTE: This form is to be completed by intake interviewer per ADC Visit #:__ __ __ subject/informant report. For additional clarification and examples, see UDS Coding Guidebook pages 15–18. Check only one box per question. Examiner’s initials:__ __ __

For the following questions: Dementia refers to progressive loss of memory and cognition, and is often described as senility, dementia,

Alzheimer’s Disease, hardening of the arteries, or other causes that compromised the subject’s social or occupational functioning and from which they did not recover.

Age at onset refers to the age at which dementia symptoms began, not the age at which the diagnosis was made.

Please consider blood relatives only.

PARENTS:

1. Did the subject’s mother have dementia (as defined above), as indicated by symptoms, history or diagnosis? 1 Yes 0 No 9 Unknown

a. If the subject’s mother had dementia, indicate the age at which she developed dementia symptoms (age at onset, as defined above). (999 = Age unknown; 888 = N/A) __ __ __ (years)

b. If the subject’s mother has dementia and is living, indicate her current age. (999 = Age unknown; 888 = N/A) __ __ __ (years)

c. If the subject’s mother had dementia and is deceased, indicate her age at death. (999 = Age unknown; 888 = N/A) __ __ __ (years)

2. Did the subject’s father have dementia (as defined above), as indicated by symptoms, history or diagnosis? 1 Yes 0 No 9 Unknown

a. If the subject’s father had dementia, indicate the age at which he developed dementia symptoms (age at onset, as defined above). (999 = Age unknown; 888 = N/A) __ __ __ (years)

b. If the subject’s father has dementia and is living, indicate his current age. (999 = Age unknown; 888 = N/A) __ __ __ (years)

c. If the subject’s father had dementia and is deceased, indicate his age at death. (999 = Age unknown; 888 = N/A) __ __ __ (years)



UDS Form A3: Subject Family History (Version 1.2, March 2006) Page 2 of 3

SIBLINGS:

3. Is the subject a twin? 1 Yes 0 No 9 Unknown

3a. If yes, indicate type: 1 Monozygotic (i.e., identical)

2 Dizygotic (i.e., fraternal)

8 N/A

9 Unknown

4. How many full siblings did the subject have? (99 = Unknown) __ __

5. How many of these siblings had dementia (as defined above), as indicated by symptoms, history or diagnosis? (99 = Unknown; 88 = N/A) __ __

For each sibling with dementia, indicate age at onset (as defined above) if living or deceased, and current age if living:

1) Age at onset 2) Current age if living

a. Sibling 1 __ __ __ (years) __ __ __ (years) (999 = Age unknown; 888 = N/A)

b. Sibling 2 __ __ __ (years) __ __ __ (years)

c. Sibling 3 __ __ __ (years) __ __ __ (years)

d. Sibling 4 __ __ __ (years) __ __ __ (years)

e. Sibling 5 __ __ __ (years) __ __ __ (years)

f. Sibling 6 __ __ __ (years) __ __ __ (years)



UDS Form A3: Subject Family History (Version 1.2, March 2006) Page 3 of 3

CHILDREN:

6. How many biological children did the subject have? (99 = Unknown) __ __

7. How many of these children had dementia (as defined above), as indicated by symptoms, history or diagnosis? (99 = Unknown; 88 = N/A) __ __

For each child with dementia, indicate age at onset (as defined above) if living or deceased, and current age if living:


a. Child 1 __ __ __ (years) __ __ __ (years) (999 = Age unknown; 888 = N/A)

b. Child 2 __ __ __ (years) __ __ __ (years)

c. Child 3 __ __ __ (years) __ __ __ (years)

d. Child 4 __ __ __ (years) __ __ __ (years)

e. Child 5 __ __ __ (years) __ __ __ (years)

f. Child 6 __ __ __ (years) __ __ __ (years)

OTHER RELATIVES:

8. Number of other blood relatives with dementia (as defined above) (cousins, aunts, uncles, grandparents, half siblings), as indicated by symptoms, history or diagnosis. (99 = Unknown) __ __

For each other blood relative with dementia, indicate age at onset (as defined above) if living or deceased, and current age if living:


a. Relative 1 __ __ __ (years) __ __ __ (years) (999 = Age unknown; 888 = N/A)

b. Relative 2 __ __ __ (years) __ __ __ (years)

c. Relative 3 __ __ __ (years) __ __ __ (years)

d. Relative 4 __ __ __ (years) __ __ __ (years)

e. Relative 5 __ __ __ (years) __ __ __ (years)

f. Relative 6 __ __ __ (years) __ __ __ (years)



NACC Uniform Data Set (UDS) – Initial Visit Packet Form A4: Subject Medications

Center: ______________ ADC Subject ID: __ __ __ __ __ __ __ __ __ __ Visit Date: __ __/__ __/__ __ __ __ ADC Visit #:__ __ __

NOTE: This form is to be completed by the clinician or ADC staff. Record ALL medications (prescription, Examiner’s initials:__ __ __ non-prescription, and vitamins/supplements) taken by the subject within the past two weeks. For additional clarification, see UDS Coding Guidebook page 19.

Include the strength of the medication, the corresponding unit (micrograms, milliliters, international units), and the number of doses (pills, injections, drops, puffs) prescribed per day/week/month. Indicate if the medication is prescribed to be used only as needed (PRN) and the average frequency of use of the PRN medication (number of pills, injections, drops, puffs taken per day/week/month). It is helpful to ask the subject to bring the medications to the research assessment, so more complete information can be obtained. If the subject does not bring the medications or a detailed list to the assessment, telephone follow-up may be necessary. Record the name and dosage of the medication as the subject is actually taking it.

1. Is the subject currently taking any prescription medications? 1 Yes 2 No

Medication strength: Enter numeric value for strength, then indicate the appropriate unit of measure (μg, mg, mL, IU)

Frequency: Enter numeric value for total number of doses taken per Day, Week, or Month

Prescribed as PRN? (if yes, also indicate PRN frequency)

PRN Frequency (average for the past 2 weeks): Enter numeric value for total number of doses taken per Day, Week, or Month

Prescription medication name (1) (2) (3) (4) (5) (6) (7) (please PRINT clearly) Strength μg mg mL IU # Doses D W M Yes No # Doses D W M

a. 1 2 3 4 1 2 3 1 0 1 2 3

b. 1 2 3 4 1 2 3 1 0 1 2 3

c. 1 2 3 4 1 2 3 1 0 1 2 3

d. 1 2 3 4 1 2 3 1 0 1 2 3

e. 1 2 3 4 1 2 3 1 0 1 2 3

f. 1 2 3 4 1 2 3 1 0 1 2 3

g. 1 2 3 4 1 2 3 1 0 1 2 3

h. 1 2 3 4 1 2 3 1 0 1 2 3



UDS Form A4: Subject Medications (Version 1.2, March 2006) Page 2 of 5



Prescribed as PRN? (if yes, also indicate PRN frequency)

PRN Frequency (average for the past 2 weeks): Enter numeric value for total number of doses taken per Day, Week, or Month

Prescription medication name (1) (2) (3) (4) (5) (6) (7) (please PRINT clearly) Strength μg mg mL IU # Doses D W M Yes No # Doses D W M

i. 1 2 3 4 1 2 3 1 0 1 2 3

j. 1 2 3 4 1 2 3 1 0 1 2 3

k. 1 2 3 4 1 2 3 1 0 1 2 3

l. 1 2 3 4 1 2 3 1 0 1 2 3

m. 1 2 3 4 1 2 3 1 0 1 2 3

n. 1 2 3 4 1 2 3 1 0 1 2 3

o. 1 2 3 4 1 2 3 1 0 1 2 3

p. 1 2 3 4 1 2 3 1 0 1 2 3

q. 1 2 3 4 1 2 3 1 0 1 2 3

r. 1 2 3 4 1 2 3 1 0 1 2 3

s. 1 2 3 4 1 2 3 1 0 1 2 3

t. 1 2 3 4 1 2 3 1 0 1 2 3




2. Is the subject currently taking any non-prescription medications (OTC)? Yes No



OTC medication name (1) (2) (3) (4) (please PRINT clearly) Strength μg mg mL IU # Doses D W M

a. 1 2 3 4 1 2 3

b. 1 2 3 4 1 2 3

c. 1 2 3 4 1 2 3

d. 1 2 3 4 1 2 3

e. 1 2 3 4 1 2 3

f. 1 2 3 4 1 2 3

g. 1 2 3 4 1 2 3

h. 1 2 3 4 1 2 3

i. 1 2 3 4 1 2 3

j. 1 2 3 4 1 2 3

k. 1 2 3 4 1 2 3

l. 1 2 3 4 1 2 3

m. 1 2 3 4 1 2 3

n. 1 2 3 4 1 2 3

o. 1 2 3 4 1 2 3






OTC medication name (1) (2) (3) (4) (please PRINT clearly) Strength μg mg mL IU # Doses D W M

p. 1 2 3 4 1 2 3

q. 1 2 3 4 1 2 3

r. 1 2 3 4 1 2 3

s. 1 2 3 4 1 2 3

t. 1 2 3 4 1 2 3

3. Is the subject currently taking any vitamins or supplements? Yes No



Vitamin/supplement name (1) (2) (3) (4) (please PRINT clearly) Strength μg mg mL IU # Doses D W M

a. 1 2 3 4 1 2 3

b. 1 2 3 4 1 2 3

c. 1 2 3 4 1 2 3

d. 1 2 3 4 1 2 3

e. 1 2 3 4 1 2 3

f. 1 2 3 4 1 2 3

g. 1 2 3 4 1 2 3






Vitamin/supplement name (1) (2) (3) (4) (please PRINT clearly) Strength μg mg mL IU # Doses D W M

h. 1 2 3 4 1 2 3

i. 1 2 3 4 1 2 3

j. 1 2 3 4 1 2 3

k. 1 2 3 4 1 2 3

l. 1 2 3 4 1 2 3

m. 1 2 3 4 1 2 3

n. 1 2 3 4 1 2 3

o. 1 2 3 4 1 2 3

p. 1 2 3 4 1 2 3

q. 1 2 3 4 1 2 3

r. 1 2 3 4 1 2 3

s. 1 2 3 4 1 2 3

t. 1 2 3 4 1 2 3




Form A5: Subject Health History


NOTE: This form is to be completed by the clinician. For additional ADC Visit #:__ __ __ clarification and examples, see UDS Coding Guidebook pages 20–23. Check only one box per question. Examiner’s initials:__ __ __

Record the presence or absence of a history of these conditions at this visit as determined by the clinician’s best judgment, based on informant report, medical records, and/or observation.

1. Cardiovascular disease Absent Recent/Active Remote/Inactive Unknown

a. Heart attack/cardiac arrest 0 1 2 9

b. Atrial fibrillation 0 1 2 9

c. Angioplasty/endarterectomy/stent 0 1 2 9

d. Cardiac bypass procedure 0 1 2 9

e. Pacemaker 0 1 2 9

f. Congestive heart failure 0 1 2 9

g. Other (specify): ___________________________ 0 1 2 9

2. Cerebrovascular disease Absent Recent/Active Remote/Inactive Unknown

a. Stroke 0 1 2 9 If recent/active or

remote/inactive, indicate year(s) in which this occurred: (9999 = Year unknown) 1) __ __ __ __ 2) __ __ __ __ 3) __ __ __ __

4) __ __ __ __ 5) __ __ __ __ 6) __ __ __ __

b. Transient ischemic attack 0 1 2 9 If recent/active or

remote/inactive, indicate year(s) in which this occurred: (9999 = Year unknown) 1) __ __ __ __ 2) __ __ __ __ 3) __ __ __ __

4) __ __ __ __ 5) __ __ __ __ 6) __ __ __ __

c. Other (specify): ___________________________ 0 1 2 9



UDS Form A5: Subject Health History (Version 1.2, March 2006) Page 2 of 3

3. Parkinsonian features Absent Recent/Active Unknown

a. Parkinson’s disease 0 1 9

If recent/active, indicate year of diagnosis: (9999 = Year unknown) __ __ __ __

b. Other Parkinsonism disorder 0 1 9

If recent/active, indicate year of diagnosis: (9999 = Year unknown) __ __ __ __

4. Other neurologic conditions Absent Recent/Active Remote/Inactive Unknown

a. Seizures 0 1 2 9

b. Traumatic brain injury

1) with brief loss of consciousness (< 5 minutes) 0 1 2 9

2) with extended loss of consciousness (≥ 5 minutes) 0 1 2 9

3) with chronic deficit or dysfunction 0 1 2 9

c. Other (specify): ___________________________ 0 1 2 9

5. Medical/metabolic conditions Absent Recent/Active Remote/Inactive Unknown

a. Hypertension 0 1 2 9

b. Hypercholesterolemia 0 1 2 9

c. Diabetes 0 1 2 9

d. B12 deficiency 0 1 2 9

e. Thyroid disease 0 1 2 9

f. Incontinence – urinary 0 1 2 9

g. Incontinence – bowel 0 1 2 9



UDS Form A5: Subject Health History (Version 1.2, March 2006) Page 3 of 3

6. Depression No Yes Unknown

a. Active within past 2 years 0 1 9

b. Other episodes (prior to 2 years) 0 1 9

7. Substance abuse and psychiatric disorders

a. Substance abuse – alcohol Absent Recent/Active Remote/Inactive Unknown

1) Clinically significant impairment occurring over a 12-month period manifested in one of the following: work, driving, legal or social.

0 1 2 9

b. Cigarette smoking history No Yes Unknown

1) Has subject smoked within last 30 days? 0 1 9

2) Has subject smoked more than 100 cigarettes in his/her life? 0 1 9

3) Total years smoked: (88 = N/A; 99 = Unknown) __ __

4) Average number of packs/day smoked: 1 1 cigarette – < ½ pack 4 1½ – < 2 packs 9 Unknown 2 ½ – < 1 pack 5 ≥ 2 packs 3 1 – < 1½ pack 8 N/A

5) If subject quit smoking, specify age when last smoked (i.e., quit): (888 = N/A; 999 = Unknown) __ __ __

c. Other abused substances Absent Recent/Active Remote/Inactive Unknown

1) Clinically significant impairment occurring over a 12-month period manifested in one of the following: work, driving, legal or social.

0 1 2 9

If recent/active or remote/inactive, specify abused substance(s): _________________________

d. Psychiatric disorders 0 1 2 9

If recent/active or remote/inactive, specify disorder(s): ___________________________________




Form B1: Evaluation Form – Physical


NOTE: This form is to be completed by the clinician. For additional ADC Visit #:__ __ __ clarification and examples, see UDS Coding Guidebook page 24. Examiner’s initials:__ __ __

SUBJECT PHYSICAL MEASUREMENTS

1. Subject height (inches): (99.9 = unknown) __ __ . __

2. Subject weight (lbs.): (999 = unknown) __ __ __

3. Subject blood pressure (sitting) (999/999 = unknown) __ __ __ /__ __ __

4. Subject resting heart rate (pulse) (999 = unknown) __ __ __

ADDITIONAL PHYSICAL OBSERVATIONS Yes No Unknown

5. Without corrective lenses, is the subject’s vision functionally normal? 1 0 9

6. Does the subject usually wear corrective lenses? 1 0 9

6a. If yes, is the subject’s vision functionally normal with corrective lenses? 1 0 9

7. Without a hearing aid(s), is the subject’s hearing functionally normal? 1 0 9

8. Does the subject usually wear a hearing aid(s)? 1 0 9

8a. If yes, is the subject’s hearing functionally normal with a hearing aid(s)? 1 0 9




Form B2: Evaluation Form – Hachinski Ischemic Scale


NOTE: This form is to be completed by the clinician. For additional ADC Visit #:__ __ __ clarification and examples, see UDS Coding Guidebook page 25. Circle only one number per characteristic. Examiner’s initials:__ __ __

HACHINSKI ISCHEMIC SCORE1

Please complete the following scale using information obtained from history/physical/neurological exam and/or medical records. Indicate if a characteristic is present or characteristic of the patient by circling the appropriate value.

Present Absent

1. Abrupt onset (re: cognitive status) 2 0

2. Stepwise deterioration (re: cognitive status) 1 0

3. Somatic complaints 1 0

4. Emotional incontinence 1 0

5. History or presence of hypertension 1 0

6. History of stroke 2 0

7. Focal neurological symptoms 2 0

8. Focal neurological signs 2 0

9. Sum all circled answers for a Total Score: __ __

1 Rosen Modification of Hachinski Ischemic Score (Ann Neurol 7:486-488, 1980).

Copyright John Wiley & Sons, Inc. Reproduced by permission.




Form B3: Evaluation Form – Unified Parkinson’s Disease Rating Scale (UPDRS1) – Motor Exam



If the clinician completes the UPDRS examination and determines all items are normal, check this box and end form here.

UPDRS MOTOR EXAMINATION

1. Speech

0 Normal.

1 Slight loss of expression, diction and/or volume.

2 Monotone, slurred but understandable; moderately impaired.

3 Marked impairment, difficult to understand.

4 Unintelligible.

2. Facial expression

0 Normal.

1 Minimal hypomimia, could be normal “poker face”.

2 Slight but definitely abnormal diminution of facial expression.

3 Moderate hypomimia; lips parted some of the time.

4 Masked or fixed facies with severe or complete loss of facial expression; lips parted ¼ inch or more.

1 Fahn S, Elton RL, UPDRS Development Committee. The Unified Parkinson’s Disease Rating Scale. In Fahn S, Marsden CD,

Calne DB, Goldstein M, eds. Recent developments in Parkinson’s disease, Vol. 2. Florham Park, NJ: Macmillan Healthcare Information, 1987:153-163, 293-304. Reproduced by permission of the author.



UDS Form B3: Evaluation–UPDRS Motor Exam (Version 1.2, March 2006) Page 2 of 9

3a. Tremor at rest – Face, lips, chin

0 Absent.

1 Slight and infrequently present.

2 Mild in amplitude and persistent; or moderate in amplitude, but only intermittently present.

3 Moderate in amplitude and present most of the time.

4 Marked in amplitude and present most of the time.

3b. Tremor at rest – Right hand

0 Absent.





3c. Tremor at rest – Left hand

0 Absent.





3d. Tremor at rest – Right foot

0 Absent.








3e. Tremor at rest – Left foot

0 Absent.





4a. Action or postural tremor of hands – Right hand

0 Absent.

1 Slight; present with action.

2 Moderate in amplitude, present with action.

3 Moderate in amplitude with posture holding as well as action.

4 Marked in amplitude; interferes with feeding.

4b. Action or postural tremor of hands – Left hand

0 Absent.

1 Slight; present with action.

2 Moderate in amplitude, present with action.

3 Moderate in amplitude with posture holding as well as action.

4 Marked in amplitude; interferes with feeding.

5a. Rigidity – Neck (judged on passive movement of major joints with patient relaxed in sitting position; cogwheeling to be ignored)

0 Absent.

1 Slight or detectable only when activated by mirror or other movements.

2 Mild to moderate.

3 Marked, but full range of motion easily achieved.

4 Severe; range of motion achieved with difficulty.




5b. Rigidity – Right upper extremity (judged on passive movement of major joints with patient relaxed in sitting position; cogwheeling to be ignored)

0 Absent.


2 Mild to moderate.



5c. Rigidity – Left upper extremity (judged on passive movement of major joints with patient relaxed in sitting position; cogwheeling to be ignored)

0 Absent.


2 Mild to moderate.



5d. Rigidity – Right lower extremity (judged on passive movement of major joints with patient relaxed in sitting position; cogwheeling to be ignored)

0 Absent.


2 Mild to moderate.






5e. Rigidity – Left lower extremity (judged on passive movement of major joints with patient relaxed in sitting position; cogwheeling to be ignored)

0 Absent.


2 Mild to moderate.



6a. Finger taps – Right hand (patient taps thumb with index finger in rapid succession)

0 Normal.

1 Mild slowing and/or reduction in amplitude.

2 Moderately impaired; definite and early fatiguing; may have occasional arrests in movement.

3 Severely impaired; frequent hesitation in initiating movements or arrests in ongoing movement.

4 Can barely perform the task.

8 Untestable (specify reason): ____________________________________________________

6b. Finger taps – Left hand (patient taps thumb with index finger in rapid succession)

0 Normal.









7a. Hand movements – Right hand (patient opens and closes hands in rapid succession)

0 Normal.






7b. Hand movements – Left hand (patient opens and closes hands in rapid succession)

0 Normal.






8a. Rapid alternating movements of hands – Right hand (pronation-supination movements of hands, vertically and horizontally, with as large an amplitude as possible, both hands simultaneously)

0 Normal.









8b. Rapid alternating movements of hands – Left hand (pronation-supination movements of hands, vertically and horizontally, with as large an amplitude as possible, both hands simultaneously)

0 Normal.






9a. Leg agility – Right leg (patient taps heel on the ground in rapid succession, picking up entire leg; amplitude should be at least 3 inches)

0 Normal.






9b. Leg agility – Left leg (patient taps heel on the ground in rapid succession, picking up entire leg; amplitude should be at least 3 inches)

0 Normal.









10. Arising from chair (patient attempts to rise from a straight-backed chair, with arms folded across chest)

0 Normal.

1 Slow; or may need more than one attempt.

2 Pushes self up from arms of seat.

3 Tends to fall back and may have to try more than one time, but can get up without help.

4 Unable to arise without help.


11. Posture

0 Normal.

1 Not quite erect, slightly stooped posture; could be normal for older person.

2 Moderately stooped posture, definitely abnormal; can be slightly leaning to one side.

3 Severely stooped posture with kyphosis; can be moderately leaning to one side.

4 Marked flexion with extreme abnormality of posture.


12. Gait

0 Normal.

1 Walks slowly; may shuffle with short steps, but no festination (hastening steps) or propulsion.

2 Walks with difficulty, but requires little or no assistance; may have some festination, short steps, or propulsion.

3 Severe disturbance of gait requiring assistance.

4 Cannot walk at all, even with assistance.





13. Posture stability (response to sudden, strong posterior displacement produced by pull on shoulders while patient erect with eyes open and feet slightly apart; patient is prepared)

0 Normal erect.

1 Retropulsion, but recovers unaided.

2 Absence of postural response; would fall if not caught by examiner.

3 Very unstable, tends to lose balance spontaneously.

4 Unable to stand without assistance.


14. Body bradykinesia and hypokinesia (combining slowness, hesitancy, decreased arm swing, small amplitude, and poverty of movement in general)

0 None.

1 Minimal slowness, giving movement a deliberate character; could be normal for some persons; possibly reduced amplitude.

2 Mild degree of slowness and poverty of movement which is definitely abnormal. Alternatively, some reduced amplitude.

3 Moderate slowness, poverty or small amplitude of movement.

4 Marked slowness, poverty or small amplitude of movement.



NACC Uniform Data Set (UDS) – Initial Visit Packet Form B4: Global Staging – Clinical Dementia Rating (CDR1)

Center: ______________ ADC Subject ID: __ __ __ __ __ __ __ __ __ __ Visit Date: __ __/__ __/__ __ __ __ ADC Visit #:__ __ __ NOTE: This form is to be completed by the clinician, based on informant report and neurological exam of the Examiner’s initials:__ __ __ subject. In the extremely rare instances when no informant is available, the clinician must complete the CDR utilizing all other available information and his/her best clinical judgment. Score only as decline from previous level due to cognitive loss, not impairment due to other factors. For further information, see UDS Coding Guidebook pages 32–33.

IMPAIRMENT Please enter

scores below None

0 Questionable

0.5 Mild

1 Moderate

2 Severe

3 1. MEMORY

__ . __

No memory loss, or slight inconsistent forgetfulness.

Consistent slight forgetfulness; partial recollection of events; “benign” forgetfulness.

Moderate memory loss, more marked for recent events; defect interferes with everyday activities.

Severe memory loss; only highly learned material retained; new material rapidly lost.

Severe memory loss; only fragments remain.

2. ORIENTATION __ . __

Fully oriented. Fully oriented except for slight difficulty with time relationships.

Moderate difficulty with time relationships; oriented for place at examination; may have geographic disorientation elsewhere.

Severe difficulty with time relationships; usually disoriented to time, often to place.

Oriented to person only.

3. JUDGMENT & PROBLEM SOLVING __ . __

Solves everyday problems, handles business & financial affairs well; judgment good in relation to past performance.

Slight impairment in solving problems, similarities, and differences.

Moderate difficulty in handling problems, similarities, and differences; social judgment usually maintained.

Severely impaired in handling problems, similarities, and differences; social judgment usually impaired.

Unable to make judgments or solve problems.

4. COMMUNITY AFFAIRS __ . __

Independent function at usual level in job, shopping, volunteer and social groups.

Slight impairment in these activities.

Unable to function independently at these activities, although may still be engaged in some; appears normal to casual inspection.

No pretense of independent function outside the home; appears well enough to be taken to functions outside the family home.

No pretense of independent function outside the home; appears too ill to be taken to functions outside the family home.

5. HOME & HOBBIES __ . __

Life at home, hobbies, and intellectual interests well maintained.

Life at home, hobbies, and intellectual interests slightly impaired.

Mild but definite impairment of function at home; more difficult chores abandoned; more complicated hobbies and interests abandoned.

Only simple chores preserved; very restricted interests, poorly maintained.

No significant function in the home.

6. PERSONAL CARE __ . __

Fully capable of self-care (= 0). Needs prompting. Requires assistance in dressing, hygiene, keeping of personal effects.

Requires much help with personal care; frequent incontinence.

7. __ __ . __ CDR SUM OF BOXES

8. __ . __ GLOBAL CDR

1 Morris JC. The Clinical Dementia Rating (CDR): Current version and scoring rules. Neurology 43(11):2412-4, 1993. Copyright Lippincott, Williams & Wilkins. Reproduced by permission.



NACC Uniform Data Set (UDS) – Initial Visit Packet Form B5: Behavioral Assessment – Neuropsychiatric Inventory Questionnaire (NPI-Q1)


NOTE: This form is to be completed by the clinician per informant interview, as described by the training video. Examiner’s initials:__ __ __ (This is not to be completed by the subject as a paper-and-pencil self-report.) For information regarding NPI-Q Interviewer Certification, see UDS Coding Guidebook page 34. Check only one box for each category of response.

Please ask the following questions based upon changes. Indicate “yes” only if the symptom has been present in the past month; otherwise, indicate “no”. For each item marked “yes”, rate the SEVERITY of the symptom (how it affects the patient): 1 = Mild (noticeable, but not a significant change)

2 = Moderate (significant, but not a dramatic change) 3 = Severe (very marked or prominent; a dramatic change)

1. NPI informant: 1 Spouse 2 Child 3 Other (specify): ______________________ Yes No Severity

2. DELUSIONS: Does the patient believe that others are stealing from him or her, or planning to harm him or her in some way?

2a. 1 0 2b. 1 2 3

3. HALLUCINATIONS: Does the patient act as if he or she hears voices? Does he or she talk to people who are not there?

3a. 1 0 3b. 1 2 3

4. AGITATION OR AGGRESSION: Is the patient stubborn and resistive to help from others? 4a. 1 0 4b. 1 2 3

5. DEPRESSION OR DYSPHORIA: Does the patient act as if he or she is sad or in low spirits? Does he or she cry? 5a. 1 0 5b. 1 2 3

6. ANXIETY: Does the patient become upset when separated from you? Does he or she have any other signs of nervousness, such as shortness of breath, sighing, being unable to relax, or feeling excessively tense?

6a. 1 0 6b. 1 2 3

1 Copyright Jeffrey L. Cummings, MD. Reproduced by permission.


NOTE: This form is to be completed by the clinician per informant interview, as described by the training video. Examiner’s initials:__ __ __ (This is not to be completed by the subject as a paper-and-pencil self-report.) For information regarding NPI-Q Interviewer Certification, see UDS Coding Guidebook page 34. Check only one box for each category of response.

Please ask the following questions based upon changes. Indicate “yes” only if the symptom has been present in the past month; otherwise, indicate “no”. For each item marked “yes”, rate the SEVERITY of the symptom (how it affects the patient): 1 = Mild (noticeable, but not a significant change)

2 = Moderate (significant, but not a dramatic change) 3 = Severe (very marked or prominent; a dramatic change)

Yes No Severity

UDS Form B5: Behavioral Assessment–NPI-Q (Version 1.2, March 2006) Page 2 of 2

7. ELATION OR EUPHORIA: Does the patient appear to feel too good or act excessively happy? 7a. 1 0 7b. 1 2 3

8. APATHY OR INDIFFERENCE: Does the patient seem less interested in his or her usual activities and in the activities and plans of others?

8a. 1 0 8b. 1 2 3

9. DISINHIBITION: Does the patient seem to act impulsively? For example, does the patient talk to strangers as if he or she knows them, or does the patient say things that may hurt people’s feelings?

9a. 1 0 9b. 1 2 3

10. IRRITABILITY OR LABILITY: Is the patient impatient or cranky? Does he or she have difficulty coping with delays or waiting for planned activities?

10a. 1 0 10b. 1 2 3

11. MOTOR DISTURBANCE: Does the patient engage in repetitive activities, such as pacing around the house, handling buttons, wrapping string, or doing other things repeatedly?

11a. 1 0 11b. 1 2 3

12. NIGHTTIME BEHAVIORS: Does the patient awaken you during the night, rise too early in the morning, or take excessive naps during the day?

12a. 1 0 12b. 1 2 3

13. APPETITE AND EATING: Has the patient lost or gained weight, or had a change in the food he or she likes? 13a. 1 0 13b. 1 2 3




Form B6: Behavioral Assessment – Geriatric Depression Scale (GDS1)


NOTE: This form is to be completed by the clinician, based on subject response. ADC Visit #:__ __ __ For additional clarification and examples, see UDS Coding Guidebook page 35. Circle only one number per question. Examiner’s initials:__ __ __

Check this box and enter “88” (did not complete) below for the Total GDS Score only if the subject 1) does not attempt the GDS, or 2) does not answer four or more of the questions.

Instruct the subject: “In the next part of this interview, I will ask you questions about your feelings. Some of the questions I will ask you may not apply, and some may make you feel uncomfortable. For each question, please answer “yes” or “no”, depending on how you have been feeling in the past week, including today.”

In the past week: Yes No 1. Are you basically satisfied with your life? 0 1

2. Have you dropped many of your activities and interests? 1 0

3. Do you feel that your life is empty? 1 0

4. Do you often get bored? 1 0

5. Are you in good spirits most of the time? 0 1

6. Are you afraid that something bad is going to happen to you? 1 0

7. Do you feel happy most of the time? 0 1

8. Do you often feel helpless? 1 0

9. Do you prefer to stay at home, rather than going out and doing new things? 1 0

10. Do you feel you have more problems with memory than most? 1 0

11. Do you think it is wonderful to be alive now? 0 1

12. Do you feel pretty worthless the way you are now? 1 0

13. Do you feel full of energy? 0 1

14. Do you feel that your situation is hopeless? 1 0

15. Do you think that most people are better off than you are? 1 0

16. Sum all circled answers for a Total GDS Score (maximum score = 15) (did not complete = 88) __ __

1 Sheikh JI, Yesavage JA. Geriatric Depression Scale (GDS): Recent evidence and development of a shorter version. Clinical

Gerontology: A Guide to Assessment and Intervention 165-173, NY: The Haworth Press, 1986. Reproduced by permission of the publisher.



NACC Uniform Data Set (UDS) – Initial Visit Packet Form B7: Functional Assessment – Functional Assessment Questionnaire (FAQ1)

Center: ___________________ ADC Subject ID: __ __ __ __ __ __ __ __ __ __ Visit Date: __ __/__ __/__ __ __ __ ADC Visit #:__ __ __

NOTE: This form is to be completed by the clinician, based on information provided by informant. For additional Examiner’s initials:__ __ __ clarification and examples, see UDS Coding Guidebook page 36. Indicate the level of performance for each activity by circling the one appropriate response.

In the past four weeks, did the subject have any difficulty or need help with:

Not applicable (e.g., never did) Normal

Has difficulty, but does by self

Requires assistance Dependent

1. Writing checks, paying bills, or balancing a checkbook. 8 0 1 2 3

2. Assembling tax records, business affairs, or other papers. 8 0 1 2 3

3. Shopping alone for clothes, household necessities, or groceries. 8 0 1 2 3

4. Playing a game of skill such as bridge or chess, working on a hobby. 8 0 1 2 3

5. Heating water, making a cup of coffee, turning off the stove. 8 0 1 2 3

6. Preparing a balanced meal. 8 0 1 2 3

7. Keeping track of current events. 8 0 1 2 3

8. Paying attention to and understanding a TV program, book, or magazine. 8 0 1 2 3

9. Remembering appointments, family occasions, holidays, medications. 8 0 1 2 3

10. Traveling out of the neighborhood, driving, or arranging to take public transportation. 8 0 1 2 3

1 Pfeffer RI, Kurosaki TT, Harrah CH, et al. Measurement of functional activities of older adults in the community. J Gerontol 37:323-9, 1982. Copyright 1982. The

Gerontological Society of America. Reproduced by permission of the publisher.




Form B8: Evaluation – Physical/Neurological Exam Findings


NOTE: This form is to be completed by the clinician. For additional ADC Visit #:__ __ __ clarification and examples, see UDS Coding Guidebook page 37. Check only one box per question. Examiner’s initials:__ __ __

PHYSICAL/NEUROLOGICAL EXAM FINDINGS Yes No Unknown

1. Are all findings unremarkable (normal or normal for age)? 1 0 9

2. Are focal deficits present indicative of central nervous system disorder? 1 0 9

3. Is gait disorder present indicative of central nervous system disorder? 1 0 9

4. Are there eye movement abnormalities present indicative of central nervous system disorder? 1 0 9



NACC Uniform Data Set (UDS) – Initial Visit Packet Form B9: Clinician Judgment of Symptoms


NOTE: This form is to be completed by the clinician. For additional clarification ADC Visit #:__ __ __ and examples, see UDS Coding Guidebook pages 38–42. Check only one box per question. Examiner’s initials:__ __ __

MEMORY COMPLAINT/AGE OF ONSET: Yes No

1. Does the subject report a decline in memory? 1 0

2. Does the informant report a decline in subject’s memory? 1 0

3a. Does the clinician believe there has been a current meaningful decline in the subject’s memory, non-memory cognitive abilities, behavior, or ability to manage his/her affairs?

1 0 (If no, end form here)

3b. At what age did the decline begin (based upon the clinician’s assessment)? __ __ __ (999 = Unknown)

COGNITIVE SYMPTOMS: Yes No Unknown

4. Has there been a meaningful decline in the subject’s usual abilities for any of the following?: a. Memory (For example, does s/he forget conversations and/or dates;

repeat questions and/or statements; misplace more than usual; forget names of people s/he knows well?)

1 0 9

b. Judgment and problem-solving (For example, does s/he have trouble handling money (tips); paying bills; shopping; preparing meals; handling appliances; handling medications; driving?)

1 0 9

c. Language (For example, does s/he have hesitant speech; have trouble finding words; use inappropriate words without self-correction?) 1 0 9

d. Visuospatial function (Difficulty interpreting visual stimuli and finding his/her way around.) 1 0 9

e. Attention/concentration (For example, does the subject have a short attention span or ability to concentrate? Is s/he easily distracted?) 1 0 9

f. Other (If yes, then specify): ___________________________________________________________ 1 0 9

5. Indicate the predominant symptom which was first recognized as a decline in the subject’s cognition:

1 Memory

2 Judgment and problem solving

3 Language

4 Visuospatial function

5 Attention/concentration 6 Other (specify):

_____________________ 88 N/A 99 Unknown

6. Mode of onset of cognitive symptoms:

1 Gradual (> 6 months)

2 Subacute (≤ 6 months)

3 Abrupt (within days)

4 Other (specify): _____________________

88 N/A 99 Unknown



UDS Form B9: Symptoms Onset (Version 1.2, March 2006) Page 2 of 3

BEHAVIOR SYMPTOMS: Yes No Unknown

7. Which of the following meaningful changes in behavior have been present during the course of the illness?

a. Apathy/withdrawal (Has the subject lost interest in or displayed a reduced ability to initiate usual activities and social interaction, such as conversing with family and/or friends?)

1 0 9

b. Depression (Has the subject seemed depressed for more than two weeks at a time; e.g., loss of interest or pleasure in nearly all activities; sadness, hopelessness, loss of appetite, fatigue?)

1 0 9

c. Psychosis

1) Visual hallucinations 1 0 9

2) Auditory hallucinations 1 0 9

3) Abnormal/false/delusional beliefs 1 0 9

d. Disinhibition (Does the subject use inappropriate coarse language or exhibit inappropriate speech or behaviors in public or in the home? Does s/he talk personally to strangers or have disregard for personal hygiene?)

1 0 9

e. Irritability (Does the subject overreact, such as shouting at family members or others?) 1 0 9

f. Agitation (Does the subject have trouble sitting still; does s/he shout, hit, and/or kick?) 1 0 9

g. Personality change (Does the subject exhibit bizarre behavior or behavior uncharacteristic of the subject, such as unusual collecting, suspiciousness [without delusions], unusual dress, or dietary changes? Does the subject fail to take other’s feelings into account?)

1 0 9

h. Other (If yes, then specify): _________________________________________________________ 1 0 9

8. Indicate the predominant symptom which was first recognized as a decline in the subject’s behavioral symptoms:

1 Apathy/withdrawal

2 Depression

3 Psychosis

4 Disinhibition

5 Irritability

6 Agitation

7 Personality change

8 Other (specify): _____________________

88 N/A

99 Unknown

9. Mode of onset of behavioral symptoms: 1 Gradual (> 6 months)



4 Other (specify): _____________________

88 N/A 99 Unknown



UDS Form B9: Symptoms Onset (Version 1.2, March 2006) Page 3 of 3

MOTOR SYMPTOMS: Yes No Unknown 10. Which of the following meaningful changes in motor function have been

present during the course of the illness?

a. Gait disorder (Has the subject’s walking changed, not specifically due to arthritis or an injury? Is s/he unsteady, or does s/he shuffle when walking, have little or no arm-swing, or drag a foot?)

1 0 9

b. Falls (Does the subject fall more than usual?) 1 0 9

c. Tremor (Has the subject had rhythmic shaking, especially in the hands, arms, legs, head, mouth, or tongue?) 1 0 9

d. Slowness (Has the subject noticeably slowed down in walking or moving or handwriting, other than due to an injury or illness? Has his/her facial expression changed, or become more “wooden” or masked and unexpressive?)

1 0 9

11. Indicate the predominant symptom which was first recognized as a decline in the subject’s motor symptoms:

1 Gait disorder

2 Falls

3 Tremor

4 Slowness

88 N/A

99 Unknown

12. Mode of onset of motor symptoms: 1 Gradual (> 6 months)



4 Other (specify): ______________________

88 N/A

99 Unknown

OVERALL SUMMARY OF SYMPTOMS ONSET:

13. Course of overall cognitive/behavioral/ motor syndrome:

1 Gradually progressive

2 Stepwise

3 Static

4 Fluctuating

5 Improved

9 Unknown

14. Indicate the predominant domain which was first recognized as changed in the subject:

1 Cognition

2 Behavior

3 Motor function

9 Unknown




Form C1: MMSE and Neuropsychological Battery


NOTE: This form is to be completed by ADC or clinic staff. ADC Visit #:__ __ __ For test administration and scoring, see UDS Coding Guidebook pages 43–47. Examiner’s initials:__ __ __ KEY: If the subject cannot complete any of the following exams, please use

the following codes for test scores (except for the Trail Making Test): 95 = Physical problem 97 = Other problem 96 = Cognitive/behavior problem 98 = Verbal refusal

1. Mini-Mental State Examination

1a. The administration of the MMSE was: 1 In ADC/ clinic

2 In home 3 In person–other

1) Language of MMSE administration: 1 English 2 Spanish 3 Other (specify): _________________

1b. Orientation subscale score

1) Time: __ __ (0–5) see Key

2) Place: __ __ (0–5) see Key

1c. Total MMSE score (using D-L-R-O-W) __ __ (0–30) see Key

2. The remainder of the battery (below) was

administered: 1 In ADC/

clinic 2 In home 3 In person–other

2a. Language of test administration: 1 English 2 Spanish 3 Other (specify): _________________

3. Logical Memory IA – Immediate

3a. If this test has been administered to the subject within the past 3 months, specify the date previously administered: __ __/__ __/__ __ __ __

3b. Total score from the previous test administration: __ __ (0–25; 88 = N/A)

3c. Total number of story units recalled from this current test administration: __ __ (0–25) see Key

4. Digit Span Forward

4a. Total number of trials correct prior to two consecutive errors at the same digit length: __ __ (0–12) see Key

4b. Digit span forward length: __ __ (0–8) see Key


NOTE: This form is to be completed by ADC or clinic staff. ADC Visit #:__ __ __ For test administration and scoring, see UDS Coding Guidebook pages 43–47. Examiner’s initials:__ __ __

UDS Form C1: Neuropsychological Exam (Version 1.2, March 2006) Page 2 of 2

5. Digit Span Backward

5a. Total number of trials correct prior to two consecutive errors at the same digit length: __ __ (0–12) see Key

5b. Digit span backward length: __ __ (0–7) see Key

6. Category Fluency

6a. Animals – Total number of animals named in 60 seconds: __ __ (0–77) see Key

6b. Vegetables – Total number of vegetables named in 60 seconds: __ __ (0–77) see Key

KEY 2: If necessary, use the following codes for the Trail Making Test only: 995 = Physical problem 997 = Other problem

996 = Cognitive/behavior problem 998 = Verbal refusal 7. Trail Making Test

7a. Part A–Total number of seconds to complete (if not finished by 150 seconds, enter 150): __ __ __ (0–150) see Key 2

7b. Part B–Total number of seconds to complete (if not finished by 300 seconds, enter 300): __ __ __ (0–300) see Key 2

8. WAIS-R Digit Symbol

8a. Total number of items correctly completed in 90 seconds: __ __ (0–93) see Key

9. Logical Memory IIA – Delayed

9a. Total number of story units recalled: __ __ (0–25) see Key

9b. Time elapsed since Logical Memory IA – Immediate: __ __ (0–85 minutes) (88 = N/A) (99 = Unknown)

10. Boston Naming Test (30 Odd-numbered items)

10a. Total score: __ __ (0–30) see Key

Check only one box below:

11. Overall Appraisal

11a. Based on the neuropsychological examination, the subject’s cognitive status is deemed:

1 Better than normal for age

2 Normal for age

3 One or two test scores abnormal

4 Most test scores are abnormal or lower than expected

0 Clinician unable to render opinion




Form D1: Clinician Diagnosis – Cognitive Status and Dementia


NOTE: This form is to be completed by the clinician. ADC Visit #:__ __ __ For diagnostic criteria, see UDS Coding Guidebook pages 48–66. Check only one box per response category. Examiner’s initials:__ __ __

1. Responses are based on: 1 Diagnosis from single clinician 2 Consensus diagnosis

2. Does the subject have normal cognition (no MCI, dementia, or other neurological condition resulting in cognitive impairment)?

1 Yes (If yes, skip to #13)

0 No (If no, continue to #3)

3. Does the subject meet criteria for dementia (in accordance with standard criteria for dementia of the Alzheimer’s type or for other non-Alzheimer’s dementing disorders)?

1 Yes (If yes, skip to #5)

0 No (If no, continue to #4)

4. If the subject does not have normal cognition and is not clinically demented, indicate the type of cognitive impairment (Choose only one impairment from items 4a thru 4e as being “present”; mark all others “absent”):

Present Absent

4a. Amnestic MCI – memory impairment only

1 0

Present Absent Domains Yes No

4b. Amnestic MCI – memory impairment plus one or more other domains (if present, check one or more domain boxes “yes” and check all other domain boxes “no”)

1 0 1) Language

2) Attention

3) Executive function

4) Visuospatial

1

1

1

1

0

0

0

0

4c. Non-amnestic MCI – single domain (if present, check only one domain box “yes”; check all other domain boxes “no”)

1 0 1) Language

2) Attention


4) Visuospatial

1

1

1

1

0

0

0

0

4d. Non-amnestic MCI – multiple domains (if present, check two or more domain boxes “yes” and check all other domain boxes “no”)

1 0 1) Language

2) Attention


4) Visuospatial

1

1

1

1

0

0

0

0

4e. Impaired, not MCI 1 0



UDS Form D1: Clinician Diagnosis (Version 1.2, March 2006) Page 2 of 3

Please indicate if the following conditions are present or absent. If present, also indicate if the condition is primary or contributing to the observed cognitive impairment, based on the clinician’s best judgment.

If Present:

Mark only one condition as primary. Present Absent Primary Contributing

5. Probable AD (NINCDS/ADRDA) (if present, skip to item #7)

1 0 5a. 1 2

6. Possible AD (NINCDS/ADRDA) (if #5 is present, leave this blank)

1 0 6a. 1 2

7. Dementia with Lewy bodies 1 0 7a. 1 2

8. Vascular dementia (NINDS/AIREN Probable) 1 0 8a. 1 2

9. Alcohol-related dementia 1 0 9a. 1 2

10. Dementia of undetermined etiology 1 0 10a. 1 2

11. Frontotemporal dementia (behavioral/executive dementia)

1 0 11a. 1 2

12. Primary progressive aphasia (aphasic dementia) 1 0 12a. 1 2

(If PPA is present, specify type by checking one box below “present” and all others “absent”):

1) Progressive nonfluent aphasia 1 0

2) Semantic dementia – anomia plus word comprehension

1 0

3) Semantic dementia – agnostic variant 1 0

4) Other (e.g., logopenic, anomic, transcortical, word deafness, syntactic comprehension, motor speech disorder)

1 0



UDS Form D1: Clinician Diagnosis (Version 1.2, March 2006) Page 3 of 3

If the subject has normal cognition, indicate only if the following conditions are present or absent. If the subject is cognitively impaired, indicate if the condition is present and also whether the condition is primary, contributing, or non-contributing to the observed cognitive impairment, based on your best judgment.

If Present:

Mark only one condition as primary. Present Absent Primary Contributing Non-contrib.

13. Progressive supranuclear palsy 1 0 13a. 1 2 3

14. Corticobasal degeneration 1 0 14a. 1 2 3

15. Huntington’s disease 1 0 15a. 1 2 3

16. Prion disease 1 0 16a. 1 2 3

17. Cognitive dysfunction from medications

1 0 17a. 1 2 3

18. Cognitive dysfunction from medical illnesses

1 0 18a. 1 2 3

19. Depression 1 0 19a. 1 2 3

20. Other major psychiatric illness 1 0 20a. 1 2 3

21. Down’s syndrome 1 0 21a. 1 2 3

22. Parkinson’s disease 1 0 22a. 1 2 3

23. Stroke 1 0 23a. 1 2 3

24. Hydrocephalus 1 0 24a. 1 2 3

25. Traumatic brain injury 1 0 25a. 1 2 3

26. CNS neoplasm 1 0 26a. 1 2 3

27. Other (specify):

_____________________________

1 0 27a. 1 2 3




Form E1: Imaging/Labs


NOTE: This form is to be completed by ADC or clinic staff. For additional ADC Visit #:__ __ __ clarification and examples, see UDS Coding Guidebook page 68. Check only one box per response category. Examiner’s initials:__ __ __

Imaging (of the subject’s head) Film Digital image available at your ADC: Yes No Yes No

1. Computed tomography 1a. 1 0 1b. 1 0

2. Magnetic resonance imaging – Clinical study

2a. 1 0 2b. 1 0

3. Magnetic resonance imaging – Research study/structural

3a. 1 0 3b. 1 0

4. Magnetic resonance imaging – Research study/functional

4a. 1 0 4b. 1 0

5. Magnetic resonance spectroscopy 5a. 1 0 5b. 1 0

6. SPECT 6a. 1 0 6b. 1 0

7. PET 7a. 1 0 7b. 1 0

Specimens available at your ADC: Yes No

8. DNA 1 0

9. Cerebrospinal fluid – ante-mortem 1 0

10. Serum/plasma 1 0

Genotyping results: Yes No

11. APOE genotype collected 1 0

nacc uniform data set (uds) forms – initial visit packet · guidebook pages 11–14. check only...

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